World Vitiligo Day: Focus on Mental Health

World Vitiligo Day is celebrated on 25^th June every year. This day is also indicated as World Purple Fun Day as purple is the awareness color for this disease. On this day, millions of people across the globe come together to create awareness about vitiligo, fight prejudice and raise funds for research, education, and support. It aims to bring the vitiligo cause to the world center stage to address the challenges faced by people living with the disease. This year, the World Vitiligo Day celebrations are being led by the US in Houston, Texas. The 2019 World Vitiligo Day Theme is “Mental and Medical Journey of Living with Vitiligo – The Journey Starts with ME!”, which focuses on the quality of life of a vitiligo patient, especially mental and emotional well-being. The reason for focusing on mental health is due to the growing need for a better understanding of the role of mental health in vitiligo treatment.

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History of World Vitiligo Day

World Vitiligo Day is celebrated in memory of pop legend, Michael Jackson, who suffered from vitiligo from 1986 till his death on 25^th June 2009. The idea of celebrating World Vitiligo Day first came to Steve Haragadon, who is the founder of the Vitiligo Friends Network. The idea was given shape and finalized by Ogo Maduewesi, a Nigerian vitiligo patient and founder and Executive Director of the Vitiligo Support and Awareness Foundation (VITSAF). The first World Vitiligo Day was observed in 2011, so this year’s celebration is the 9^th edition. The vitiligo celebrations move across the globe and are hosted by a different country each year. It kicked-off from Nigeria in 2011, and then moved to Italy (2012), USA (2013), and India (2014). This year, it is again being hosted by USA.

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How is World Vitiligo Day Celebrated?

World Vitiligo Day is celebrated through various events and activities, some of which are briefly highlighted below:

• Conferences & Seminars: These events provide an opportunity to share the latest developments in vitiligo research. For example, the US World Vitiligo Day Conference is being held in Houston, which is the highest profile event in the world this year and is being organized by the Houston Vitiligo Awareness Movement. In India, the Indian Association of Dermatologists, Venereologists, and Leprologists (IADVL) is organizing conferences and seminars in its various Chapters across India
• Vitiligo Camps: Vitiligo camps that provide free check-ups and advice by doctors provide immense support to vitiligo patients. Many hospitals provide free medicines and medical procedures such as phototherapy and surgical interventions such as punch/blister grafting at reduced charges. This will encourage underprivileged patients from poor communities to attend these camps
• Vitiligo Walkathons & Rallies: These are very effective ways of generating awareness about vitiligo. Participants holding placards and banners help to spread the message about the various myths associated with the disease prevailing in society
• Street Plays: These are ideal ways of communicating with lay people and spreading the message. Street plays are especially effective for illiterate people who can hear and comprehend, despite not being able to read
• Social Media: This is a powerful tool for reaching maximum people in minimum time. For example, the latest information and updates about the ‘World Vitiligo Day Conference 2019’ in Houston is being shared on Facebook to publicize the event
• Real Life Stories: Everyone with vitiligo has a story to tell. Therefore, there is a need to reach out to people living with vitiligo to come together and participate in open discussions on the subject and share their journey with others
• The “Vitiligo Rath” – An Innovative Idea to Spread Awareness: The Karnataka Chapter of IADVL conceptualized this rath or chariot. It is actually a display van that has banners and educative materials about vitiligo, which travels around Karnataka, spreading awareness in every nook-and-corner of the state. Due to the immense response from the public, the program is being expanded to other parts of India too
• Wearing Purple: Purple is the awareness color for vitiligo. So, wearing something is purple, such as a purple ribbon, lapel pin, T-shirt, cap, or wristband will show solidarity for people living with vitiligo, as well as raise money from the sales to help those in need

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Vitiligo: Facts & Figures

• Vitiligo is not a communicable disease
• Vitiligo can strike anyone at any time or age
• 100 million people or 1.2 percent of the global population is affected by vitiligo
• 1 in 100 people are affected by vitiligo
• 30 percent of patients have a family history of vitiligo
• Children of vitiligo patients have a 5 percent chance of getting the disease
• 75 percent of vitiligo patients have a negative self-image
• 15-25 percent of vitiligo patients have at least one other autoimmune disease
• 50 gene mutations (alterations) have been linked to increased risk of vitiligo
• Vitiligo is a life-long condition with no cure

Vitiligo and its Ramifications

Vitiligo, also known as leukoderma, is an autoimmune disease that causes loss of the pigment melanin from areas of the skin, resulting in spots or irregular white patches. The cause of vitiligo is not well understood, although it is known that genetics plays a role to some extent. The disease affects one percent of the population and can start at any age, but usually appears before 20 years. It affects both males and females and all races and ethnicities. Vitiligo is not contagious, and although it doesn’t cause any physical trauma, the psychological and social trauma can be devastating, often leading to depression, isolation, and neglect. People with vitiligo also have a higher risk of sunburn, skin cancer, vision problems, and hearing loss.

Latest Research and Treatments for Vitiligo

Cutting-edge research is currently making waves in the vitiligo therapeutic field. A couple of these success stories are highlighted below:

• Ruxolitinib Topical Cream: A promising new drug called ruxolitinib has been developed for topical application that is extremely effective in reversing the effects of vitiligo. A US nationwide Phase II clinical trial conducted by Tufts Medical Center in Boston found that in about half of all patients who applied ruxolitinib cream on the face, there was 50 percent improvement in areas affected by vitiligo within 24 weeks. The findings have been presented at the 24^th World Congress of Dermatology in Milan, Italy, on 15^th June 2019
• Melanocyte Keratinocyte Transplantation Procedure (MKTP): Conventional treatments such as phototherapy and laser therapy aim to stimulate the melanocytes to produce melanin. A new approach, called melanocyte keratinocyte transplantation procedure (MKTP), involves transplantation of melanocytes on the affected skin. This revolutionary procedure, which is being evaluated at the University of California, Irvine has a high success rate in treating vitiligo patients

What Does Alternative Medicine Say?

Alternative systems of medicine such as Ayurveda, Homeopathy, and Naturopathy claim to have effective treatments for vitiligo. For example, in Ayurvedic Medicine, various herbs such as Bakuchi, Bhringraj, Chitrak, and Khadir are considered to be effective for treating vitiligo patients. Homeopathy claims that vitiligo can be treated by Ginkgo biloba. Naturopathy advises natural remedies such as drinking water from a copper vessel, reducing stress, or applying sunscreen, red clay and papaya on the affected skin. However, in all these cases, stringent scientific studies are lacking.

Challenges Faced by People with Vitiligo

There are essentially two types of challenges faced by vitiligo patients – psychological and social, which are briefly highlighted below:

• Psychological Challenges: Vitiligo has a profound psychological and emotional impact, causing immense mental stress, which starts with the diagnosis of the disease and continues throughout life. Scientific studies have clearly shown that mental stress is linked to vitiligo, which can manifest in the form of shame and insecurity, often leading to depression. Therefore, mental health should be a part of the overall treatment strategy
• Social Challenges: In a society that is obsessed with physical appearance, people with vitiligo can feel just helpless. Due to the color of their skin, they face social stigma, discrimination, ostracism, and social neglect at every step of their life. Children are frequently teased, ridiculed, and bullied by their peers, while adults experience low self-esteem, employment discrimination, and relationship problems. For female vitiligo patients, especially in India, marriage proposals are often canceled solely based on the color of their skin. Therefore, there is a need to promote open dialogue about the social impact of vitiligo

Hence, there is an urgent need to get recognition of vitiligo from the United Nations to enable multilateral collaborations for developing new therapies and implementing healthcare education programs to attack this disease in a holistic manner.

So, on World Vitiligo Day, let us all do our little bit to generate awareness, enlighten the public and raise funds to tackle this dreadful disease and help improve the quality of life of people living with vitiligo.

Reference:

1. Vitiligo Activities in India in Recent Times - International Association of Dermatologists, Venereologists and Leprologists (IADVL) - (https://www.iadvl.org/vitiligo.php)
2. UCI Health Recognizes National Vitiligo Day to Raise Awareness - University of California, Irvine, USA - (http://www.ucihealth.org/news/2017/06/national-vitiligo-day-2017)
3. Topical Cream for Vitiligo - Tufts Medical Center, USA - (https://www.tuftsmedicalcenter.org/News-Events-Media/Press-Releases/2019/Topical-cream-for-vitiligo)

Source-Medindia